My 15 month old daughter was diagnosed with an orbital hemangioma at 7 weeks via a MRI. We have a team of 11 specialists that treat her as in all our research throughout the last year we have found no doctors, with the exception of one orbital specialist, who has seen such a case. Are there any other fellow cases on the forum? She has been treated with propanolol since 8 weeks and we have had great success with the treatment but are still seeking fellow cases. Thank you!
There are a couple of parents here who struggled with orbital hemangioma, but it's been a while since they were active. If you write to Dr Fay via our Ask the Expert form, he might be able to direct you to some other families. http://birthmark.org/experts.php
His form should be open... you have to login with the username and password that you use here. If for some reason it isn't working right, send your question to firstname.lastname@example.org and I will forward it to him. You may attach a photo, if you think it might help... although I gathered it might not help in your case.
An international charitable
organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment,
provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance
for individuals with birthmarks.
Here you will find information and resources for patients and families affected by hemangioma, port wine stain,
arteriovenous malformation, capillary malformation, lymphatic malformation, Sturge Weber syndrome, Klippel-Trenaunay syndrome, and any other type of vascular birthmark
Information accessed through the VBF is presented in summary form
in order to impart general information relating to the diagnosis
and treatment of vascular birthmarks. Such information is not complete
and should not be used as a substitute for a consultation or visit
with your physician or other health care provider. Information accessed
through VBF website is not exhaustive and does not cover every aspect
of vascular birthmarks. VBF makes no warranty as to the information's
completeness, reliability or accuracy. Should you have any health
care related questions regarding this matter, please see your physician
or other health care provider promptly.
Information accessed through the VBF website is provided "AS
IS" and without warranty, express or implied. All implied warranties
of merchantability and fitness for a particular use or purpose are
hereby excluded. VBF shall not be liable under any theory or indemnity.
In no event shall VBF be liable for any damages, direct or indirect,
and all other damages, direct or indirect, special, incidental,
consequential or punitive, are hereby excluded even if VBF has been
advised of the possibility of such damages.